Living with Dwarfism

Life for people with skeletal dysplasia is getting better, thanks in part to the renowned research and care of a local children’s hospital.

by Kim Hoey

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Around 2 p.m. every day, 20-year-old Lizzy MacDonald rolls out of bed, scoots down the stairs, turns on her computer, her music and her coffee maker, then starts to organize her day. She’s a human relations student at Delaware Technical and Community College, a night owl who enjoys keeping up with friends on Facebook, and she’s a NASCAR fan. Her latest projects are trying to figure out how to finance a car for herself and planning a big night out for her 21st birthday.

MacDonald, of Dover, is every bit the average young adult, with one exception—she’s 30-inches tall. MacDonald is one of the possibly 100 people of short stature in Delaware. (There is no official count. All information is collected anecdotally.)

A little person, or person of short stature, is defined by the Little People of America Association as someone whose adult height is 4-feet 10-inches or less. The condition is known properly as dwarfism, or skeletal dysplasia.

There are more than 350 different kinds of skeletal dysplasias named with several others still unclassified. The most common form is achondroplasia, which is often diagnosed at birth from bowed legs, disproportionately large head, and shortened arms and legs.

Blanket statements, however, should not be made, says Dr. Michael Bober, a pediatrician and clinical geneticist at Alfred I. duPont Hospital for Children in Wilmington. The only thing that all these dysplasias have in common is that they create people of short stature.

Only about one in every 10,000 babies—a fraction of 1 percent of the American population—has dwarfism. Because dysplasia is a genetic disorder, it can happen with any birth.

“More than two-thirds of all achondroplasts are the first in their families,” Bober says.

Wendy Seichepine can relate. She is 5-foot-7. Her husband is 6-foot. Yet their 6-year-old son, David, will probably be closer to 4 feet tall as an adult. Though it was, at first, difficult to understand and accept, they now take a “what will be will be” attitude. Having shows such as “Little People, Big World,” a TLC reality show about a family with two short-statured parents, has helped limit questions from people and given her son someone to relate to.

Pat Connolley, president of the Ches-Del Bays Chapter of the Little People of America, is often asked about her height of 4 feet. The answer usually satisfies the curious: “I tell children it’s just the way God made me.”